Faithy's Medical Funds
Donation protected
Faith (or Faithy as we like to call her) is the daughter of my best friend and one of the happiest little girls I know. There is hardly a time when she doesn’t have a huge, ear to ear grin on her face. She has had to struggle from day one and (I'm guessing) because of this she is also the strongest person I know at only 5 years old. I wish I could wave a magic wand and make her struggles disappear but the forces that be have chosen her path and all I can do is ask for financial help from everyone and anyone I know. This little girl deserves the world but realistically an electric wheelchair and the equipment that go along with it are what she needs.
Here is her story...
Faith was born seven weeks premature via C-section because she wasn't growing and the doctors were concerned with what appeared to be a congenital heart defect (CHD); a hole in her heart, amongst other things. She was a tiny little sweet pea, so tiny that the pacifier covered half of her face.
Because she was so tiny she remained in the NICU for 6 weeks. When she finally came home, she had to take medications for the CHD. Unfortunately the meds weren't working. The hole in her heart wasn't getting any smaller and was leading to other complications. So at 3 months old, the doctors decided that she needed to have a "simple procedure" called a PDA Ligation to close the hole. Something that is, as the doctors said, a "very normal procedure" and it "could be done with their eyes closed."
While we were in the waiting room, the nurses came in to tell us there were complications and she was not going to come out of the OR. We were in total disbelief and then IT HIT US. Y'all can imagine. We prayed harder than ever while the Doctors were performing CPR and trying to keep her alive.
It was hours before she would come out of the OR and when she did all kinds of tubes were coming out of her and she would be in an induced coma for days. The Doctors had to go back into OR mode hours later as she was still bleeding profusely. Once she was stabilized, the doctor sat us down and explained that the hole was bigger than expected and when the clamp was placed on the hole to close it, her aorta tore and she was bleeding out, so much so that they couldn't tell where the blood was coming from. They had to put a clamp on all of her arteries to figure out where it was coming from. By doing so, there was lack of blood flow and oxygen to the brain and to her spine, in essence a stroke, which caused spinal cord and brain injury. And so it was all a matter of wait and see.
Every day the doctors gave us worst case scenarios: if she does live she may not talk, she may not see, she may not hear and she will not walk and for a while weren't even sure if she was brain dead. We couldn't hold her for days. Then slowly but surely she began to wake up and about a month later we were sent home with PT, OT and speech therapy as well as lots of meds and lots of specialist visits. We've created another family with some of these folks.
Because of the surgery other situations have arisen. She started having seizures but thankfully she hasn't had an episode in over a year because of the medication. She had to have surgery to release her hip flexors as they became contracted due to lack of movement in her legs. She was diagnosed with cerebral palsy last year due to some muscle spasticity. She also has scoliosis for which she has to wear a brace throughout the day and has worn several orthotics. Just recently we found out that she does indeed have a rare genetic disorder: Multi-systemic Smooth Muscle Syndrome. It affects all of her smooth muscles, i.e her heart, bladder, veins, etc. There have only been 7 reported cases since 1999 and in those cases the patients needed to have surgery due to possible aneurysms. Yes, aneurysms...how about that? Something else to worry about, ugh! However, it does shed some light on what may have occurred during the surgery. Because of this diagnosis, it is possible that her PDA was not normal and caused her Aorta to tear during the surgery.
We've shed lots of tears, happy and sad. We don't take for granted even the smallest of accomplishments because we have Faith.
We are hoping that you can help bring us closer to making her more mobile. Even if it’s just a few dollars; the cost of a cup of coffee from your favorite place, anything will help. And please, share our story and encourage your friends and family to help Faithy.
Here is her story...
Faith was born seven weeks premature via C-section because she wasn't growing and the doctors were concerned with what appeared to be a congenital heart defect (CHD); a hole in her heart, amongst other things. She was a tiny little sweet pea, so tiny that the pacifier covered half of her face.
Because she was so tiny she remained in the NICU for 6 weeks. When she finally came home, she had to take medications for the CHD. Unfortunately the meds weren't working. The hole in her heart wasn't getting any smaller and was leading to other complications. So at 3 months old, the doctors decided that she needed to have a "simple procedure" called a PDA Ligation to close the hole. Something that is, as the doctors said, a "very normal procedure" and it "could be done with their eyes closed."
While we were in the waiting room, the nurses came in to tell us there were complications and she was not going to come out of the OR. We were in total disbelief and then IT HIT US. Y'all can imagine. We prayed harder than ever while the Doctors were performing CPR and trying to keep her alive.
It was hours before she would come out of the OR and when she did all kinds of tubes were coming out of her and she would be in an induced coma for days. The Doctors had to go back into OR mode hours later as she was still bleeding profusely. Once she was stabilized, the doctor sat us down and explained that the hole was bigger than expected and when the clamp was placed on the hole to close it, her aorta tore and she was bleeding out, so much so that they couldn't tell where the blood was coming from. They had to put a clamp on all of her arteries to figure out where it was coming from. By doing so, there was lack of blood flow and oxygen to the brain and to her spine, in essence a stroke, which caused spinal cord and brain injury. And so it was all a matter of wait and see.
Every day the doctors gave us worst case scenarios: if she does live she may not talk, she may not see, she may not hear and she will not walk and for a while weren't even sure if she was brain dead. We couldn't hold her for days. Then slowly but surely she began to wake up and about a month later we were sent home with PT, OT and speech therapy as well as lots of meds and lots of specialist visits. We've created another family with some of these folks.
Because of the surgery other situations have arisen. She started having seizures but thankfully she hasn't had an episode in over a year because of the medication. She had to have surgery to release her hip flexors as they became contracted due to lack of movement in her legs. She was diagnosed with cerebral palsy last year due to some muscle spasticity. She also has scoliosis for which she has to wear a brace throughout the day and has worn several orthotics. Just recently we found out that she does indeed have a rare genetic disorder: Multi-systemic Smooth Muscle Syndrome. It affects all of her smooth muscles, i.e her heart, bladder, veins, etc. There have only been 7 reported cases since 1999 and in those cases the patients needed to have surgery due to possible aneurysms. Yes, aneurysms...how about that? Something else to worry about, ugh! However, it does shed some light on what may have occurred during the surgery. Because of this diagnosis, it is possible that her PDA was not normal and caused her Aorta to tear during the surgery.
We've shed lots of tears, happy and sad. We don't take for granted even the smallest of accomplishments because we have Faith.
We are hoping that you can help bring us closer to making her more mobile. Even if it’s just a few dollars; the cost of a cup of coffee from your favorite place, anything will help. And please, share our story and encourage your friends and family to help Faithy.
Organizer and beneficiary
Nancy Bonilla Arcos
Organizer
Fort Lauderdale, FL
Wendy Cummings
Beneficiary
